Questions for Hospice?

[Peege]

Hi everyone.  I haven't really posted much in this forum -- just a few initial questions as my mother began treatment for a recurrence of her NSCLC last Jan.  After 12 rounds of keytruda & alimta -- she showed small progression in October/November.  Her oncologist was giving her the option between Docytoxyl and a FATE trial that would continue the keytruda.  My mother's last infusion was early November -- when she took a treatment break to return and talk about the trial -- she returned from a trip to Mexico with apparent AKI.  At first the doctors thought dehydration and the sun from Mexico -- and the oncologist sad my mother's kidneys "were sad" -- and though they may not get back online, they may -- and the trial etc. etc.  They thought it might be reversible -- she has spent the last three weeks getting IV fluids as well as a full kidney workup.  Her GFR is at 20 now -- no improvement is happening.  She's at a research hospital here in MN -- and the kidney doctor was planning on pursuing a kidney biopsy if her numbers didn't turn around , they did a full echo on her heart, checked the structure of her kidneys-- her appt to check on brain mets showed a stroke since the last scan in October, which was new (and frankly we didn't notice any significant changes -- my mother is cogent and was an extremely healthy, skier, walker, gym every day person before her diagnosis last Jan --all of this information opened the door for a nurse practitioner (with verbal okay from her ONC) to talk about hospice and the fact that she didn't have several months -- probably only a few months.

I'm furious about how it was delivered -- I had tried to have conversations with her ONC making clear that she needed to be the one to talk with my mother -- who was in denial and really on the fence about whether to keep going with the trial or stop -- and the doc was still giving her the impression that the trial was possible when it was clear my mother's kidneys may never recover -- and then she didn't have the decency to have the conversation with my mother face to face -- but rather shifted that conversation to an NP my mother had seen exactly two other times this entire year.

I know it's the right time for my mother to be told this -- just the delivery was shocking for her -- and I fear that it will make her refuse hospice on principle -- leading to her having some serious adverse event that puts her in the hospital and she never leaves. 

They have the hospice people trying to set up an informational meeting for this Friday -- she doesn't see her ONC again until the 15th of February.  I cannot imagine my mother being ready to die and withhold fluids -- she is definitely not there -- but she also can't function without these IVF and occasional blood transfusion to bring up her hemoglobin.  

What questions do I ask the hospice folks? I tried to ask about the IVF but they were gently talking about "patient education" and how they often have to be told that doing that just prolongs symptoms.... my mother's symptoms are fatigue, nausea, shortness of breath -- she has a difficulty doing much more than walking to her bed or bathroom -- but she does -- she's eating and her partner and she  take the occasional walk down the block -- but without IVF she is in a terrible state.

I'm just at a loss as to how all of this happened so abruptly with so little communication from her care team.

So if anyone has any good questions they wish they had asked hospice -- or things I should know I'd welcome them all!  Her partner takes the lead in all care right now -- it is just the two of them -- my mother is 78 and her partner is 60.

 

Thanks so much, 

 

Pam 

[Babs]

Pam,

I am also in the twin cities.  I will be starting the FATE trial next week through the University of Minnesota.  Is this where your mothers being treated?  I have the same, fatigue, nausea, with the exception of shortness of breath.  I don’t have any advise on hospice as I am not even ready to consider that yet.  How is your Mom reacting to all of this?  If you don’t mind me asking, what caused her to forgo the trial, unless I’m confused and she did start it?  If so, how long has she been on it?  
 

I hope you’ve both found some peace with all of this in the last week.  Reach out to me if you have any questions I can answer.  
 

Babs

 

[LouT]

Pam,

So sorry to hear about your mother's condition.  It surely sounds complicated and dire.  I've been forced to learn much about Palliative Care and Hospice as my wife is in a treatment facility and will soon move from Palliative Care to Hospice.  Palliative Care continues to provide curative and chronic care with whatever restrictions your mother may want on it (e.g., no ventilator).  As people begin to show signs that their bodies are transitioning toward eventual death the doctor or NP may determine that Hospice Care is more appropriate.  They usually decide this based on a few criteria:

1. The person is not expected to live past six months.
2. There is little to no curative value in performing additional procedures or tests.  In short; the value of treatments does not outweigh any discomfort or other effect on the patient as they will likely have little impact on longevity.
3. The person will be kept comfortable, appropriate pain meds and oxygen cannula when needed and the person and/or family will need to provide advanced directives regarding such things as; to resuscitate or not, feeding tube or not, etc.
4. The person will be re-evaluted at the end of the six-month period to see if they should remain on hospice or not.  If at any time there was a major change in her condition that causes the medical team to remove her from hospice before the 6-month period they would, but that is a rarity.

My wife does not have cancer or heart or lung disease, but rather Fronto-Temporal Dementia.  So..physically speaking she would not seem to be a candidate for hospice, but her brain is dying so quickly that she is now having mini-strokes and losing control of her physical facilities and as a result her health is quickly deteriorating.

In conclusion, I understand that this is such a difficult time for you, but nonetheless there may come a time where treatment, tests and all the other discomforts of a medical protocol may be hard on her and without medical benefit.  I hope the above helps somewhat and pray for your mom and your family. 

BTW, there is an excellent book on this topic written by a famous hospice nurse the book is "The Final Act of Living" by Barbara Karnes and it was a great help to me.  You can also find some of her lectures on YouTube.

Lou

[Judy M2]

Peege, I have plenty of hospice experience. Lou has given you good information about it, and Lou I'm sorry for what you and your wife are going through. Hospice decisions are usually made under duress so there is precious little time to figure things out. 

First, get recommendations about hospice providers if you can. There are good ones and not so good ones. If anyone you know has had a good experience, then an interview would be next. They will come to you. Ask them about staff turnover. It's a red flag if people don't stay long. Ask about reliability of pharmacy delivery. The last thing a patient needs is for comfort meds not to be delivered on time. Ask whether they have 24-hour phone service and people on call--you might need to contact them in the middle of the night. Ask about the frequency of visits from the hospice nurse or nurse practitioner, aides, social worker and chaplain. Ask whether a crisis nurse is sent to attend the end of life. They will probably ask your mother or a family member to sign a DNR directive.

I've had very different hospice experiences with 3 different relatives. My most recent was for my father, who was under hospice care for almost 2 years before dying last year at age 99. In his case, he was forced into hospice care by a physician's assistant at the hospital he was in. He never saw a specialist for his condition, only a physician's assistant. Our experience was incredibly cold, similar to what you're going through. When the word "hospice" was spoken, my father absolutely refused, so I had to sign the hospice contract and I told him he had a new healthcare provider. At the time, we were also under extreme pressure (by the hospital) to move him out of his assisted living facility to a board and care home where he could get 24-hour care. It was an awful time. 

Finally, if the hospice provider you initially choose doesn't work out, you can certainly engage another. I did that last year over New Year's because the pharmacy did not deliver urgently needed anti-anxiety meds for 3 days (the required turnaround time is 24 hours or less). 

Some people do well under hospice care because many medications get eliminated. Don't be afraid of morphine, it is used for pain and to ease air hunger if breathing is difficult. The patient can get nebulizer treatments to ease breathing. If oxygen is used, make sure hospice delivers both an electric concentrator and manual tanks (in case of a power outage)--and have the hospice nurse/NP test them before they're needed. A hospital bed is a must, and to avoid pressure wounds (bed sores), a special mattress that inflates can be delivered. 

Once under hospice care, the goal will be comfort care and not treatment. The hospice provider you'll be interviewing should make this clear. 

I'm sorry your mother is going through this, it's such a rude shock. I've never gotten over the anger from my experience, but it does tends to fade as you confront many decisions that need to be made.